And Then…Meningitis

Sometimes things happen that require a change of plans. Like getting meningitis in Borneo.

Jenni first started feeling sick our last night in Kuching (Sunday), after we returned from a fantastic trip staying at an Iban longhouse. Her symptoms were not immediately apparent. I recall her saying “I don’t know, I just don’t feel well.” This soon became a severe headache and fever with chills plus fatigue and mild nausea. The next morning we woke at the crack of dawn for a flight to Miri and a drive into Brunei. Jenni spent the rest of the day resting in the hotel room, and by dinner she was tired but otherwise pretty much fine.

On Tuesday, we were out and about in Brunei and that evening we flew to Kota Kinabalu. The next morning we drove a couple hours up to Kinabalu Park, where we planned to spend the night near park headquarters before beginning our Mount Kinabalu hike on Thursday morning. When we arrived, Jenni was tired and spent the afternoon relaxing on the day bed. Many tears were shed, but that’s because she was watching The Notebook on HBO.

As we went to bed, it seemed like the hike was nearly sure to happen. But that night Jenni’s fever spiked again, accompanied by horrible chills and a crushing headache. In the morning, she said she could not make the hike but that I should go for it. After all, we had come to Sabah only to climb this mountain and we were both thrilled at the prospect. It is a serious hike that usually entails ascending from ~6,150’ to a mountain lodge at ~10,800’, spending the night there and waking around 2 am in hopes of watching the sunrise from the peak at ~13,500’. The upper portion of the trail is very steep and requires climbers hold on to a rope. Less than a month ago, a German girl tragically died after falling from the summit. We will cover the mountain in more depth in a separate post, since we learned a bit about it despite missing the hike.

I had a couple hours still to decide whether or not to begin the hike. Given I would have been away from Jenni for about 30 hours and communication would have been difficult if not impossible, it seemed the right choice was to bail on the hike. Of course had we known then the severity of the situation, it would never have been a question. We had started to suspect Jenni might have malaria, but we still wondered if she was just experiencing something akin to the flu.

We spoke again with my dad who pointed out to us lay folk that it is one thing to suffer severe headaches, spiking fevers and some nausea. It is quite another when there is a complete absence of any upper respiratory symptoms, no diarrhea and at that point no vomiting. Despite that we have been very conservative (spendthrift even?!) in taking malarone our entire trip, her symptoms sounded quite similar to malaria. And so on Thursday morning we decided to leave the mountain and head straight to KPJ Sabah Specialist Hospital (fka Sabah Medical Centre) back in the city of Kota Kinabalu.

::Jenni’s first walk post-meningitis at Sabah Medical Centre::

By this time, Jenni was feeling worse and worse. A doctor examined her in the E.R. and they drew blood for general analysis plus to test for malaria, dengue fever and typhoid. The results came back negative, but we learned that false negatives are not unheard of, and even more so if the patient is taking malaria prophylaxis and blood is drawn while the fever has come down. (By the way, this isn’t medical advice and if you’re a doctor and disagree with what I’m saying, then you’re probably right! I’m only conveying what I was told and what our experience was like 🙂 )

The medical staff sent us home with instructions to return in the morning for further blood work. Jenni spent the rest of the day near incapacitated, and as we had finally bought a thermometer from the hospital I was able to check her temperature: just shy of 103. By this time we were growing very concerned because Jenni’s condition seemed to be worsening and as yet we had no diagnosis. Friday morning was the nadir.

We returned to the hospital and she immediately had to lie down. The E.R. doctor from the previous day had said he’d just begin treating her for malaria today even if the results again were negative. She was in so much pain and barely communicating, and I was terrified. Was it cerebral malaria? It started to feel to me like seconds and minutes became critical. I became quite pushy and the E.R. doctor called down one of his colleagues. At the same time they put Jenni on an IV because she was not eating or drinking anything.

I was on the phone constantly with my father, and at one point walked away from Jenni’s bed so she wouldn’t hear me cry. I knew she needed me to be calm and in control, and if she knew how upset and scared I was that would only exacerbate her own fear and could only make matters worse. Our new doctor administered some antibiotics and agreed she might have malaria or perhaps it was meningitis. Jenni was admitted to the hospital and within a few hours we saw the neurologist.

Her second and third malaria tests (the second taken immediately upon arriving at the hospital Friday morning, a third blood test drawn a couple hours later when her fever spiked again) also came back negative.

Next came Jenni’s first MRI, followed a few hours later by her first (and hopefully only) lumbar puncture, aka spinal tap. Here again I will pretend to possess some medical knowledge. Meningitis cannot be detected in the blood, but rather it requires an analysis of cerebral spinal fluid (CSF). And since it’s not that easy to put a temporary hole in someone’s head, the doctor gets the CSF sample from the base of the spinal column. Or something like that. By now Jenni was far from well but certainly better than she had been that morning or the previous day.

After several more agonizing hours, we got the results of the spinal tap and the neurologist told us that Jenni had viral meningitis. Not usually cause for celebration, but since we at last had a diagnosis and it was not malaria and did not seem to be bacterial meningitis, we were quite relieved. At least I was. We found out the next day that Jenni didn’t realize viral is the less serious type of meningitis. She thought she had the type that could be fatal, and she cried tears of joy when her father mentioned otherwise.

She ended up spending three nights in the hospital, getting poked by a lot of needles and with several drugs administered…antibiotics, antiviral, pain medicine, nausea medicine to counter the nausea caused by the meningitis and the pain medicine, etc. Luckily the other bed in the room was empty so I did not have to sleep on the floor.

::getting unplugged::

I knew Jenni needed to rest and not think too hard, so I suggested we try to download a movie to watch. Jenni asked if I thought watching the Bachelor would be OK. I’m no doctor, nor did I stay at a Holiday Inn Express last night, but since meningitis is an acute inflammation of the protective membranes covering the brain, it seems logical that shrinking the brain might be advantageous.

Once we knew what was wrong and Jenni started to feel better, we had the chance to begin reflecting on the experience. What struck us first and foremost is how lucky we were that it happened here. While it’s hard to say you’re lucky when you get meningitis, we felt that Singapore is the only place we’ve been the past three months where it’s easy to imagine the situation could have been better. More on this below, but we were working with a tour company for the only time on the trip thus far and they were most helpful, the hospital facilities were modern and clean, and the care Jenni received seemed excellent. I’ve been to many hospitals in the U.S., and this was at least as nice as several of those. We also heard this hospital has the only certified neurologist in Sabah, a rather fortuitous fact.

In addition to a crash course in tropical diseases and meningitis, we learned a few other lessons. Be pushy. Do not sit back and assume someone else has everything under control. While it might have worked out the same either way, I believe that constant inquiry and double-checking and pressing led to greater and more prompt focus on taking care of Jenni. Having travel insurance can be a good thing. We never have in the past, but for this trip we do. So we hope to suffer minimal financial loss. Have a doctor in your life that you can call on any time. More on that below, but it made a really scary and difficult situation slightly more tolerable. We have bought SIM cards in most but not all countries. Having one here was a lifesaver (figuratively, at least).

Many of you have asked about our travel plans in light of this ordeal. Our flight to Manila on March 1 was obviously out of the question, given that Jenni was lying in the hospital with an IV in her arm that day. We had made all the arrangements to snorkel with whale sharks in Donsol and then trek in northern Luzon before heading to Palawan. Those former destinations we will have to skip for now.

To say that Jenni has been a trooper through this is a massive understatement. It would have been reasonable, if not expected, for her to want to head back home and reevaluate the situation and our plans. Instead, she has shaken off the emotional impact and we’re ready to get back at it.

We feel very fortunate that Jenni was able to recuperate at the Shangri-La Rasa Ria, a terrific beach resort less than an hour from the city. Next week we will fly to Palawan and with any luck Jenni will be 100% recovered and ready to proceed with our planned Nepal trek in April.

::these sunsets are definitely aiding in her recovery::

I think a “special thanks” section would be in order here, and this is by no means an exhaustive list. We appreciate all the love and support of our family and friends My father has been my first call for any medical issue for my entire life. Not only because he’s my father, but because he is brilliant. Unfortunately, this means he had to field calls from drunken frat boys at odd hours of the night during my Tufts years.

He was in communication with us throughout, starting well before we reached the hospital. In fact, we first appreciated Jenni’s condition could be serious when he said that it didn’t sound like nothing. For those of you who know Ron, his personality and incredible knowledge conspire to make him shrug off most problems. Well, he does’t really shrug them off, he just seems unimpressed. Like, “oh, it sounds like X. If doing Y hurts, don’t do Y. I predict a full recovery.” He knows just about everything, but supplemented that with research of his own since he’s not an infectious disease doctor and certainly not a tropical specialist. He guided us from afar, including in the middle of the night and at times speaking on the phone with the attending physician. There is simply no way to overstate the value of a doctor 100% focused on your interests and with a competence level way off the charts. When Jenni was starting to recover, she said something to the effect of “your dad is a freak of nature. I am so happy we have him.” Me too.

We booked our Borneo trip through Hannah G. at Audley. Their team and local agents/partners in Kota Kinabalu and up at Mount Kinabalu were exceptionally helpful and thoughtful. We were staying at Kinabalu National Park when we decided medical attention was in order. The staff at the lodge there were so accommodating (the whole time, not just in sickness), we thought we might be getting punked. Audley’s local agents are the ones who recommended the KPJ hospital. When our plan to spend the night on the mountain was superseded by a night in Kota Kinabalu, they put us up at Le Meridien which was first class. The team was in touch constantly, and one of the guys on the ground even visited us at our hotel and later at the hospital. I would call out the names of these local agents since they certainly deserve it, but if you want to know just get in touch with Audley. We had done virtually all our travel independently until Borneo, and boy were we glad that Audley and their team were there to help us.

While we suspected malaria and before we understood the quality of care at KPJ, I reached out to Swimmy and Matt K. in case we decided we should rush to Singapore. Both assured me I could count on their full support and would not have to touch down blind. Much love.

When it became clear that our onward travel plans (immediately to the Philippines) required alteration, I started making calls and sending emails. Expedia’s customer service was very good, as was agoda’s. Leo at Uncharted Philippines continued to “wow.” The Philippines is not such an easy place to figure out travel plans for a first-time visitor. The options seem endless and many destinations are difficult to reach. I had extensive email and phone conversations with Leo while planning our trip. I cannot say enough good things about his responsiveness and even more so his diligence. He is one of the only people I’ve ever worked with who answers all my questions and then answers the four other questions that I should have asked. His attention to detail is impeccable. We had booked a couple awesome sounding treks and he provided some other travel services. Five days before the arrangements were scheduled to begin (i.e. well beyond the 15-day advance notice requirement), I emailed Leo on a Saturday morning explaining the situation. I offered to provide a medical certificate but did not yet have it. He replied four hours later, by which time his refund of our payment in full (other than out of pocket expenses he’d already incurred and charges for planning services previously delivered) had already hit PayPal.

Last and certainly not least, the doctors and staff at KPJ were wonderful. We really couldn’t have been more pleased with the facility nor the quality of care, especially considering this is still a developing country. By the time Jenni was discharged, we were sad to say goodbye!

It is times like these when it’s hard to describe the soul-warming effect of great friends and family. I tear up just writing this because it means so much to me.

Alan covered this trying experience in a moving and honest way, but it’s important to acknowledge his incredible support and contribution throughout this ordeal. I’ve had a history of being a slight hypochondriac, so when I was told by multiple doctors that my symptoms could indicate any one of several tropical diseases (raise your hand if you’re familiar with chikungunya) and/or meningitis (none of which I know very much about), you could say I was panicked. (Prior to this experience my knowledge of “lumbar puncture” was limited to “isn’t there a movie called This is Spinal Tap? And didn’t I read somewhere that a spinal tap is one of the most painful medical procedures out there? (turns out, it’s not, but it’s still pretty damn scary when a doctor in a foreign country tells you he needs to insert a needle into your spine)). To be sick is one thing. To be undiagnosed and later diagnosed with a disease you’ve only heard of in the context of college students dying, all while in a foreign country whose health care system you know next to squat about? This is a situation in which you need moral support. Alan was my rock throughout the entire experience. He fought for my access to the best care I could receive, he wore his bravest face even when he was scared himself, fielded phone calls from my parents back stateside who were understandably terrified and helpless feeling, bought every cracker available in the convenience store when I couldn’t stomach hospital food and got a craving for saltines, and he tirelessly took care of me and all the headaches this disease caused, making phone calls, canceling flights and hotel reservations, obtaining test results and letters from the doctors, reaching out to insurance companies, and so on and so on. I am so thankful to call him my husband and my partner. I’ve teared up several times since this ordeal, at how lucky I am in a number of respects, many of which Alan outlined above, but especially for his love and support.

Jesus. This is the first I’ve heard of all this! So happy the worst is over and I’m so impressed with how you all handled it–and wrote about it with such clarity and grace. Bravo, brava, and Hallelujlah! Love, Leslie

so happy that everything turned out okay…you had me worried for a bit! it sounds like you guys did everything that you could to ensure a happy ending and you are both very lucky to have each other…best wishes on the rest of your travels xoxoxox J

Dear Alan, dear Jenni, so impressed about your courage and support to each other. Thanks God the worst is over. All my admiration to you both and to your so so professional Dad.
Jenny, all my love, hope one day i will meet you. Best wishes.
Marie-Pascale

I only read this today! So happy Jenni is safe and sound! Have to say, your bravery highly encouraged me-you could choose to either shake off the hard feelings from the past and keep moving on, or be sucked in and become more and more frightened. I’ve been practicing the later for quite a while and couldn’t help myself. So happy you guys shared your amazing story so that I see it’s possible to make a different choice!

As a few other commenters have noted, this post made me tear up; thankfull, the Bachelor reference got me smiling again. Sending much love from afar. You are both troopers for not letting this slow you down!